Majority of child autism referrals will be rejected under new criteria SW England

[noblegiraffe]

A story in the Guardian says that on 1st March, NHS South West England introduced, without warning, new criteria for accepting autism referrals.

These include risk of education breakdown, risk of family breakdown, or very low communication levels, which is an extremely high threshold.

https://www.theguardian.com/society/2023/mar/26/children-put-at-risk-as-nhs-autism-assessments-are-cut-back

As a teacher, this is horrifying. A child being diagnosed with autism means that the support can be put in place that may prevent an education breakdown or family breakdown in the future. This will mean that things have to reach crisis point before a referral is even accepted.

Schools are supposed to provide support per need, without a diagnosis, but resources are so scarce that those with a diagnosis are obviously prioritised.

The story also says the new approach brings the SW in line with services in the rest of the country. So autistic children are being denied a diagnosis across the country?

mids2019
what are you taking about?

It does feel like the definition of autism gets wider and wider. I can understand Health services needing to triage things somehow in order to have any hope of being able to help those most in need.

There is every reason. Both my children’s’ non diagnosis lead to their complete breakdown and development of serious mental illness. If you don’t know the why you don’t know the how to get well and why you are struggling.

Autism has blighted my life, my diagnosis has been life changing.

MaggieThatchersFridge

How is it getting wider and wider?

It does feel like the definition of autism gets wider and wider.

No. The problem is definitely under diagnosis, not over diagnosis.

@MaggieThatchersFridge

I suppose with any condition we need to define criteria for it. I think an idea of a spectrum of neurodiversity makes binary definition diffcult. Is it possible the NHS will set the criteria based on resource; if there is limited resource the criteria are more stringent.

This exactly. We wanted to pay for a private assessment, but we're told it wouldn't be acceptable to apply for an ehcp. So there was no point really as it would not have enabled us to access any help.
We are now 3 years into waiting for NHS help, our ds is not managing at school, self harms and has attempted to take his life twice.
No camhs support because of "suspected" asd, No asd support because no diagnosis.

Absolutely. Children are getting to secondary school without a diagnosis and then falling to pieces. If my children had had their diagnosis earlier it would have saved the NHS thousands.

I am interested to hear more about this? In what way did the non diagnosis lead to serious mental illness and how would a diagnosis have changed it?

mids2019

So those who are autistic and not getting diagnosed when they should then fall to pieces at secondary and put a drain on Cahms, schools,the NHS…… sounds great.

This is what concerns me, what ASD support do you think will magically be forthcoming with a diagnosis? How will a diagnosis change things do you think?

If the LA have a blanket policy of not accepting independent assessments they are acting unlawfully. Apply for an EHCP, for which a diagnosis isn’t required anyway, and if refused appeal. If you do appeal and get an independent assessment (for an ASD diagnosis or anything else) SENDIST do consider them.

Then if you get an EHCP MH provision can be included in there.

A diagnosis is not a magic bullet. It will change exactly nothing in terms of what a school can offer

Of course there is a need for diagnosis. You wouldn’t say the same about any other condition. A diagnosis can help people understand themselves better and help others understand them.

The majority of provision in EHCPs is needs based but there is a minority which is dependent on diagnosis. For example, some ASD specialist schools and ASD ARPs only accept those with a formal diagnosis, and in some LAs the autism specialist teaching service only works with those with a diagnosis.

Some groups e.g. autism youth groups need a diagnosis, too.

Tories

How do you establish what needs they have.without assessing the needs as part of a multidisciplinary team of OT, SALT, and clinical psycholgist. Whats the point of all those people assessing the child to fully understand their needs and then not bothering to suggest why they might have those needs at the end of it.

My daughter didn’t know why she felt different,wasn’t identifying or handling her emotions well or her sensory issues and other traits. This lead to self harm and food restriction as coping mechanisms , suicidal
idealisation and attempts on her life. Knowing the why and getting help and even info on areas she struggles with would have lessened her sense of isolation, helped with her understanding of herself and given her coping strategies .

I would if it is a condition that there is no 'treatment' for. Totally see the point re specialist schools and services, though it would be better if they were need based rather than diagnosis driven IMO.

@Blu3Salv1a

Resources are definitely necessary and related quick diagnosis. I think diagnosis has to be fully in the hands of medical professionals to ensure diagnosis is appropriate. The problem is that with slow diagnosis parents are left in limbo with having to rely on self diagnosis. For clear diagnosis clear definition of symptoms helps.

Well if the needs are not evident unless under close examination from a range of professionals I would suggest that the needs are not that great. IME most parents and children have a pretty good idea of the need prior to diagnosis, that is the reason they are seeking the diagnosis.

There is plenty of treatment that is useful - help with sensory struggles , handling anxiety, identifying emotions, handling emotions and mind sets, help with conversation, speech therapy, sleep….

So you don’t think a learning disability, Down’s Syndrome, visual impairment or other conditions where there is no ‘treatment’ needs to be diagnosed?

The key in what you say is 'Knowing the why and getting help and even info', IME diagnosis doesn't lead to help and the info is available without a diagnosis. I am not saying you are wrong but I think you are massively overestimating what is available simply as a result of a diagnosis.

None of those things are dependent on an autism diagnosis

Counselling, anger management, CBT, one to one support in school, alternative provision for education, medication to help with his "suspected" ADHD comorbidity, financial help to cover additional costs such as specialist clothing and shoes, replacement of items damaged during meltdowns, respite care......the list goes on.
I'm not sure if you have experienced life with a child with additional needs but there is a lot of help required and we are told is available but so much does depend on that diagnosis.

School giving a time out pass does not constitute suitable provision.